hubby, me and Multiple Myeloma

In the beginning my husband was diagnosed with Mulitple Myeloma in 2012. I was stunned….shocked…my world crumbled .....he had always been healthy and active and into exercise …in our long marriage I can’t remember him ever taking a Panadol! After a year of increasing pain and many, many, blood tests and scans they finally came up with a diagnosis….and with a tumour on his spine…rushed into surgery. ….so they gave a diagnosis …and described treatment protocols and there are some things they didn’t tell me …..

….and time goes on…there are more more treatment protocols. I know that this type of cancer is not curable because they have told me that…….it’s just about treatment options to keep it under control. …and there is a dulled sense of security

So I wear a brave face ....and smile…nod….. Without understanding

They don’t say that time speeds up ….protocols change dynamically ...weekly/daily…diagnosis become more complex….more confronting…….they say “you will have years” …..and then it's 'urgent' again there is a timetable of appointments in no time……. Blood tests, scans …stays in hospital………suddenly in no time it seems to take over my life…again.....it is what we talk about as a couple….it has a firm place in my day ….and thoughts…….

Occasionally I break free…and dream of holidays and bucket lists …..of things to do and places to go…I socialise…meet with friends…..

But then as insidious as the cancer, the timetables/appointments creep in again…clamouring for attention and …….usurping the right to dream and plan………

the wheel spins faster…….and we run faster to keep up

They tell me…that as the partner I need to have a support system……HA!

Adult children want to be supportive, helpful…..supporting Mum……..but…understandably…it becomes too confronting for them as well……its Ok when it was just cancer…something vague… .out there ,“but dad looks ok?”

..but then it becomes the impact on daily life….possible loss of mobility……possible loss of hearing as it creeps into his jaw ….what ifs….what ifs…..

who can blame them for being as scared as me…….and yet they have the luxury to withdraw …to become children again……insecure…afraid…..overwhelmed….

and I have to be the adult……..but I am also a child……..I too want to withdraw into another world …..

So….talk to friends…….who want to be supportive/helpful….but it’s just too hard for most to comprehend ….or just to listen…

for some who have been through the journey…too raw…..……

so again the vacuum creeps in and again it’s just me and hubby and the cancer…the deadly trio.

So…talk to a counsellor…..um about what??? Well-meant advice …...focus on the positive……take each day as it comes…relax…keep your normal routine as much as possible….look after ‘you’ ….

It’s tiring …and sometimes it’s just too much and I wonder if I have gone into denial….has the pendulum swung too far in the other direction?

And of course…Talk to God……he understands……….

yeah…but it’s a bit of a one way conversation…..a bit like the scene from Ghost …as his ghost sits behind her as she creates pottery ….holding her …guiding her hands…and romantic music and words play in the background ……but she cannot feel…..see or hear him……when all she wants is to be held in a way that is real…..the movie version of love is as thin as the celluloid it is recorded on…..

Being the partner of someone who has cancer…is lonely, isolating, tiring…and full of misunderstanding ,unfiltered emotions and conversation…..potentially coming between those I love and me…as I try and reach out to them…… they in turn curl away protecting themselves from more pain…. reaching out to me with their faces turned away.

It is painful watching your loved one change …not only physically….but emotionally…even smelling different because of the chemicals in his body………the person/dreams we had when we were married didn’t include this …even the phrase ’in sickness and in health’ has a hollow ring to it…we say yes …and nod with an innocent heart full of commitment and promise….....

thank you for replying.....its comforting to know that someone is out there

and we are not alone ...it is hard to talk about this stuff....and even as i am typing this i am wiping tears as the words tumble onto the page. after 6 years one would think i would have it together with all this stuff....but i feel like the sand on the beach....constantly being changed...reformed....with each wave of change....the shoreline constantly being changed...sometimes powerfully after a storm surge....and even in the quietness of lapping of the ocean on an evening beach....i am still being eroded........

My husband has pancreatic stage 3 cancer. We have had Whipple and are doing chemo very harsh. Hopefully we will withstand this and the mighty hand of the only one who can make the difference will intervene. In the meantime I am waiting, trying to make dent in the emotional pattern of grief both of us have bumped head into...I will be praying for you both...I do believe in miracles...even when they are delayed....

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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.